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Everything is crazy around here! Sierra has developed two new seizure types in the last year. She now has tonic clonic (grand mal) and drop (myoclonic) seizures. We were able to get a neuro-psych evaluation done, a genetic panel, and finally meet with an epilepsy specialist. Not only does Sierra have epilepsy, but she also has ADHD, ODD (oppositional defiance disorder), and Sensory Integration and Processing Disorder. ODD basically is attached to ADHD and makes her have major issues with authority; it also makes things very interesting!

The new specialist that we are seeing believes that it is possible Sierra has intractable epilepsy. This means that the seizures can’t be fully controlled by medicine. We have luckily been able to keep her on the same medication this last year, but we are constantly having to change the dosage or add/subtract additional medication. In the last year and a half we have changed the dosage 5 times, added other medications, and then taken them away. The problem is that she has barely grown in that time, in fact she has been losing weight in the last 6 months, so the changes weren’t due to her outgrowing the dosage.

We have new tests coming up this month! In fact she has a 3-day Video EEG next week and a sedated MRI in two weeks. After the results will be a new medicine change. We have only done the 24-hr Video EEG and have never done the MRI so this will be new for us. I am lucky that Sierra is a trouper when it comes to doctor visits and hospital stays!

I realize that it has been a long time since I have written anything about our life with epilepsy. Since 2014, we have been on 7 different seizure medications, plus multiple dose changes. Only once in all this time have we been considered “medically controlled.” This means that the medicine, Zarontin, was controlling the seizures but we weren’t seizure free. This lasted for about the month of October in 2014 because Sierra had a growth spurt which caused the medicine to not work the same. A blood test showed that her levels were too high and that we would need to add another medication instead of just increasing the Zarontin. That did not end well.

After October, 2014, we started having behavior issues in and out of school. At this time, Sierra was only in Kindergarten at age 5, and she only weighed 32 pounds.She was literally the smallest one in her class, but she became the class bully. She was hitting, kicking, biting, throwing things… you name it and she was doing it. In March of 2015, Sierra’s behavior was out of control and she ended up choking another student with her epilepsy alert bracelet. Thankfully, the other student wasn’t hurt, but my husband and I decided that we were going to home school her.

Homeschooling wasn’t an easy decision, especially since I was working at the time. However, we knew that we couldn’t let her keep hurting other people while we tried to sort out her medication. We tried two other medications before we got to Lamictal. Her neurologist said that she had no other suggestions if this didn’t help and to get a second opinion.

In September of 2015, Sierra developed a severe rash reaction to Lamictal. This rash covered her entire body and put her in the hospital for three days. No one knew what the rash was at first; we got everything from “it’s a bug bite” to “I don’t know.” It’s very unnerving to hear a medical professional tell us that they don’t know and to call someone else. We ended up taking her to the Children’s Hospital and received the best care. She seen about 14 different doctors to get a final diagnosis, but they were all working together and communicating to get us the best care. We left the hospital with a new neurologist and an appointment for a follow-up a month later.

In February of this year, Sierra had her first tonic clonic seizure. Sierra and I were at church and my husband was at work. She started acting strange, like she had lost all muscle tone, and just wanted to be held. While I was holding her, she started convulsing. Luckily, it only lasted for a few seconds; afterwards, she lost consciousness for about an hour and a half. Since I had known that this was always a possibility, I had done quite a bit of research to make sure that I knew what to do when the time came, and I was prepared. Sort of. While I held her while she was sleeping, I had all these thoughts running through my head. What if I had done things differently? What if it had been worse? What if I hadn’t been holding her? It was awful.

We have been extremely lucky that it was her only tonic clonic seizure so far. We have also been blessed with a good neurology team and an amazing family. Homeschooling is hard, epilepsy is the pits, but my daughter is the light of my life and I wouldn’t change her for the world… except maybe getting her to listen more! 😉

Sierra has been on Keppra (aka KeppRage) since her diagnosis. We have had sleepless nights, anger, and full-on war temper tantrums. These are well-known side effects of the Keppra but the Dr. insisted that this was the medicine to start with because of her high risk for the tonic clonic, or grand mal, seizures. We really tried to deal with it, but after 4 weeks enough was enough! The medicine wasn’t stopping the seizures and was causing more problems than I could handle. All three of us were ready to pull our hair out.

The Dr. has now prescribed Zarontin, so we are now slowly adding the new medicine and will be reducing the Keppra on Friday to half-dose. We still have 10 more days until she is off the Keppra and on full-dose Zarontin. This means that we are unfortunately dealing with the side effects of two medications, not just one. Which leads me to today.

Sierra has recently become aware of the cartoon Pokemon. It has almost become an addiction for her because that is all she ever wants to watch anymore. Thanks Netflix 😦 lol. Well, today she was watching an episode that could be considered sad if you had been paying attention since the beginning. Butterfree (a type of butterfly) had been caught by Ash (main character) as a Caterpie (caterpillar) and had now transformed twice, much like a caterpillar would in the real world. Well this episode had Butterfree leaving Ash to find a mate and start a family. Sierra started bawling! I mean full-on gut wrenching sobs that broke my heart. I asked her what was wrong and her reply was “I don’t want Butterfree to leave!”

I tried to explain that Caterpie was similar to a baby, Metapod was like the teenager, and Butterfree would be considered an adult. I told her that she would grow up to be an adult one day and would leave to get married and start a family. This only made her cry harder! She climbed up into my lap and told me that she didn’t want to be an adult and that she never wanted to leave. She had a complete emotional breakdown and all I could do was hold my baby girl.

She passed out for a nap not long after this. Her little body just wore out from being so upset. She had already had two seizures earlier in the day and then this episode. I wish I could take it away and just let her be a happy little girl 😦

May 14,2014. It’s amazing how a day gets stuck in your brain. The date, what you did that day, how you were feeling, possibly even what you were wearing, is stuck on rotation in the mind. However, what a doctor tells you is lost in translation after the dreaded diagnosis: Epilepsy. Nothing else the doctor was telling me was sinking in, the word epilepsy was on a loop like an old-fashioned record that is stuck.

A mother knows when something is wrong with her child. Call it intuition or just being around 24/7. When Sierra started behaving strangely and having more potty accidents than ever I just knew something was not right. She wasn’t sleeping through the night anymore and was acting up in her preschool. My polite, well-mannered little girl was getting into fights and talking back to her teacher. I’ll be honest, I got really scared. Getting up the nerve to take Sierra to the doctor took a lot of effort. I was in denial and I didn’t want to know. I pretended that I was just being overprotective and it was just my daughter having an overactive imagination causing her symptoms. Her pediatrician was willing to listen and decided that Sierra should get looked at by a pediatric neurologist. What she didn’t say was that would be the most agonizing 6 weeks for a terrified mom.

During Sierra’s first neurologist appointment, she had one of her “spells” (for a lack of a better term). She was supposed to touch Doctor R.’s index finger and then touch her nose. She touched his finger and went to touch her nose but in mid-motion she stopped and put her hand down and started looking around with really knowing what she was doing. Doctor R. called it Transient Alternate Awareness. He ordered an EEG and an overnight sleep study (which is not fun with a small child because it’s hard to settle them down). It took 3 more weeks to get the results and then another week waiting on pins and needles knowing that the results were “abnormal”.

Primary Generalized Epilepsy. It means that instead of just part of the brain causing the seizures, the entire brain misfires. Sierra has absence seizures – meaning that her brain checks out for a few seconds. It can cause her to stand still and her eyes flutter a little, wandering without realizing it, slurred speech, and disrupted sleep. In her case, it is more than likely genetic from her bio-dad. Did I mention our daughter is adopted? We were unaware of the possibility of it being genetic until I called my sister, who happens to be Sierra’s bio-mom.

These last few weeks have taken its toll on the family. We have been discussing care plans, home-schooling, babysitters, me going back to work, medicines and side effects. Right now she is on 1.5mg dose of Keppra but she still has quite a few break through seizures and her mood swings are terrible. We still have another 3 weeks before her next doctor’s appointment. I am just thankful that we have such a good support system in all this because I am still scared silly. Sierra, on the other hand is taking everything that gets thrown at her like a champion. She is my hero in this ❤